Urethral stricture - my experience
Posted , 9 users are following.
About a month ago I was due to have an optical urethrotomy, prior to which I visited this site looking to gain an insight into what I could expect. I was very grateful to other people for having taken the time to share their experiences although most of them seemed to be tales of woe. For this reason I decided to tell about my own story which, so far at least, is going well.
For some years I have had a poor urine flow which, following examination by my GP was diagnosed as an enlarged prostate. I took the prescribed Tamsulosin which made no difference. As the symptoms gradually deteriorated, I was referred to the Royal Berks Hospital for prostate surgery. The consultant thought that my prostate was not too big after all and decided to use a camera to look at my urethra in order to confirm there was "nothing else going on". Bingo.... a urethral stricture in the bulbar region of my penis.
So I underwent the procedure and was supposed to remain in hospital for at least one night but, due to a lack of beds, was discharged the same day. A catheter had been fitted during surgery and I was given instruction in how to empty it, fit the night bag and to change the bag for a new one. The plan was to return to hospital after a week to have the catheter removed following which, if I could pee properly, I would have a 50% chance of being a free man. Everything went well, but what I didn't expect was to then have to self dilate for four months before seeing the urologist again for a progress report. That was a shock; naive of me I suppose.
The self dilation was daily for a week, then every other day for a month, then twice weekly for three months, then a follow up with the consultant. I am now nearing the end of the first month and soon will be dilating twice weekly. I can't deny that this process is difficult for me although not painful at all. The hardest thing to deal with is what is going on in your head. It's just not right to have to insert 3/4 of a 40 cm long tube into your bladder via your penis. However, I've managed so far and although I have to do this again in about an hour and am beginning to worry already, I will continue to manage.
The upside is that I can pee normally. I had forgotten what that was like and I'm amazed every time I have to go. Hopefully this will continue and I can lead a more normal life.
A huge shout out to the NHS staff at The Royal Berkshire Hospital in Reading. They are doing an amazing job under very difficult circumstances and I am extremely grateful.
Hopefully this account of my experience is a help to others. I will update as necessary.
0 likes, 30 replies
osakadan hobnob1871
Posted
mine looked like this. You lube up the rounded end and insert it. once you get to a certain depth the pee just starts flowing, hence the green stopper. There is no bag. just let if flow into the toilet, shower or sink. i found the toilet impossible and would end up with pee all over the floor or myself . shower was easiest. then the bathroom sink.
hobnob1871 osakadan
Posted
Happyhacker, you will be taught how to use this. I agree with Osakadan as I too found the toilet impossible. My first attempt was following instruction in the hospital consulting room and was a disaster. I managed to pee everywhere except the intended receptacle. Nevertheless, try not to get too uptight about it because it is much easier than you might think and you will find a way of dealing with it. I found the hardest part was what was going on in my head because the process is just so alien and in four months, I never did quite come to terms with it.
But every day is another day closer to recovery. Good luck to you.
osakadan hobnob1871
Posted
i did it for 1-2 years.. Physically it was fairly easy but i had a mental issue with it. i was initially told I needed to do it once a day but another doctor said a few times a week was ok. i did it less and less and accidentally on purpose go for 2-3 weeks. Don't do that what ever you do. my urethra pretty much closed up and i needed an emergency procesure.
Happyhacker osakadan
Posted
Are we saying the catheter is permanent then? I thought it was to 'set' the cut stricture to be wide so that it did not reheal to the 'closed' position again right after surgery. Thanks.
Happyhacker hobnob1871
Posted
How long before the catheter could be dispensed with? Thanks.
osakadan hobnob1871
Posted
i think each person is different depending upon the severity of the stricture.
Before being operated on i had 4? occasions when my urethra closed up completely because of the stricture. the first time i was catheterized for about 5 weeks. That stretched out the urethra enough that it lasted another 8-10 years before another incident occurred. Then I had 3? more incidents. Those times i was catheterizd for 4-6 weeks. the first time it lasted about a year. The final time only about 3 months. That was when I was told to catheterize daily..... when it became obvious i was hopeless at that (I let it go twice and blocked up both times) the doctor decided that I should have monthly stretching for a year or so while I was waiting for surgery. Apparently though, that stretching can cause the stricture to worsen.
Franpanman osakadan
Posted
Hi, I am curious, what specifically were the incidents?
osakadan Franpanman
Posted
The stricture completely blocked the urethra and I couldn't pee. The first few times i didnt realize so I left it a while before going to hospital and by the time i was there I was jumping up and down in pain and the bladder wasn't too far away from bursting. They would then need to do an emergency catheterization but a few times they tried from largest down to smallest size and still couldn't so had to go through my abdomen to release some pee and the pressure and later they would stretch out the urethra. .... all very traumatic and intensely painful. And it damaged the urethra causing more scar tissue... I guess that's why I call them incidents.
Franpanman osakadan
Posted
Can you remember anything what caused the stricture?
osakadan Franpanman
Posted
the only thing i can remember is a bicycle accident when i was taking a big jump on my bmx bike. probably around 9-11 at the time. i came down with a thud on the crossbar. and my testicles blew up in size for what seemed ages.
Bicycle accidents are a common cause.
Franpanman osakadan
Posted
I agree. Bicycles are a common cause. Last year I injured my perineum. Now (1 year later) I still have discomfort urinating. I am nervous I might get the strictures as well.
osakadan Franpanman
Posted
you could or it could be a long time away. hopefully you'll be all fine!
Happyhacker hobnob1871
Posted
I've now got a date for my stricture op end of this month. Currently I can pee slowly bit if I want to empty I must strain a bit. I am wondering if my stricture which is nearly 10 weeks old has settled (perhaps not need the Op which surgeon says he will make cuts) or will it slowly close up?
Th other query I have is with the self-catheterisation when it needs to be inserted say once a week, how long does it have to stay in?
If one has to later go to hospital to get an empty why hasn't doing it oneself worked?
Thanks.
Kellc1 Happyhacker
Posted
I had structure surgery 14 months ago. I would say mine went well. What a pleasure to be able to urinate normally. I empty a full bladder in about 10 seconds. No pain. Feels good! Yay!! FYI mine was from a bike accident some 50 years ago
It does seem as though the urethra, possibly at the point of the stricture repair, but almost seems more like the
sphincter muscles at the bladder opening, tends to shrink a little in a weeks time. I do self catheter about once a week. In, pee, and out in under a minute. Seems to keep me just fine.
Sent from my iPhone
Happyhacker hobnob1871
Posted
Sorry, I forgot to ask with my reply above: do they give drugs to take after stricture op?